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OFFICIAL REPORT (Hansard) Committee for Health OFFICIAL REPORT (Hansard) Severe Fetal Impairment Abortion (Amendment) Bill: Down's Syndrome Research Foundation; Don't Screen Us Out 17 June 2021 NORTHERN IRELAND ASSEMBLY Committee for Health Severe Fetal Impairment Abortion (Amendment) Bill: Down's Syndrome Research Foundation; Don't Screen Us Out 17 June 2021 Members present for all or part of the proceedings: Mr Colm Gildernew (Chairperson) Ms Paula Bradshaw Mr Alan Chambers Ms Órlaithí Flynn Ms Cara Hunter Ms Carál Ní Chuilín Witnesses: Ms Lynn Murray Don't Screen Us Out Dr Elizabeth Corcoran Down's Syndrome Research Foundation UK The Chairperson (Mr Gildernew): I apologise to Elizabeth and Lynn for the delay in the meeting. We had to suspend the meeting and return following the unscheduled plenary session of the Assembly. I appreciate that you are back with the Committee at this point. I welcome Dr Elizabeth Corcoran, chair of the trustees, Down's Syndrome Research Foundation. Can you hear me, Dr Corcoran? Dr Elizabeth Corcoran (Down's Syndrome Research Foundation UK): Yes, Chair. The Chairperson (Mr Gildernew): I welcome Ms Lynn Murray from Don't Screen Us Out. Can you hear me, Lynn? Ms Lynn Murray (Don't Screen Us Out): I can hear you. Can you hear me? I had problems with my laptop, and I am on my phone. The Chairperson (Mr Gildernew): We can hear you, but the volume is a little low. Can you speak as loudly as possible? I advise members and witnesses that sound is improved with the use of a headset, and I remind everyone to put themselves on mute when not speaking. Dr Corcoran, can you give us a brief five-minute presentation? Afterwards, members will ask questions. Dr Corcoran: Yes. Thank you for the invitation to speak at the Health Committee today. A dearth of research on Down's syndrome led to a parent initiative to establish the Down's Syndrome Research Foundation in 1989. The aim was to improve the health outcomes for people with Down's syndrome. Today, I speak as the Chair of the Down's Syndrome Research Foundation, and I have held that role for over 10 years. I also have a background as a doctor psychiatrist. 1 Over the years, it has been a challenge for my charity to fund and establish research projects in the UK, and, indeed, worldwide due to prenatal screening programmes and high termination rates. In fact, recent research found that people with Down's syndrome die 28, years before those who do not have the condition. The research accentuates the urgent need for more high-quality research as many of these deaths in the learning-disabled community are avoidable. In fact, the report from the Learning Disability Mortality Review (LeDeR) has just been released. Survival rates for people with Down's syndrome have improved, mainly thanks to better inclusion in mainstream society, freedom from institutions where they were dying at a young age and the opportunities that being in the community affords them for general healthcare. However, even in the 1990s, people with Down's syndrome were still not being offered the health care they needed such as life-saving heart operations. However, hard-fought victories have been achieved, and even babies with Down's syndrome who require heart operations can expect to be offered that surgery. That surgery is successful over 90% of the time. Unfortunately, we know from our recent Freedom of Information request that only about £5 per person per year is spent on treatment and intervention studies for people with Down's syndrome. In comparison, we know from the Freedom of Information request that, between 2010 and 2018, the National Institute for Health Research (NIHR) and the Medical Research Council (MRC) spent £5·4 million on improving the screening programme; indeed, the NHS spends over £30 million every year on antenatal screening. Hence, the 40,000 people living with Down's syndrome in the UK still have to deal with something called diagnostic overshadowing and a lack of focused health screening and specialised treatments. The routine offer of screening has not led to any therapeutic benefits for the Down's syndrome community, even down to enhanced counselling or care pathways for expectant mothers. Those still largely do not exist. In maternity care, women's decisions after it is found that the baby has Down's syndrome are questioned repeatedly. We were involved in the development of a publication of a report that confirms that many women are subject to subtle and not-so-subtle pressure to terminate their pregnancies. The Royal College of Obstetricians and Gynaecologists (RCOG) reiterated that issue as part of a recent statement on the care of women who are offered screening. Whilst the choice to terminate based on disability may appear to be helpful for women, disability abortion has a more worrying aspect to it, as observed in the statement by the Royal College of Obstetricians and Gynaecologists. When RCOG was questioned by the UK National Screening Committee on its decision not to provide the new non-invasive prenatal testing (NIPT), it said: "If the decision has been made primarily on cost grounds, then a more rigorous economic analysis has to be made that includes the lifetime costs of caring for children and adults with Down’s syndrome". In the years following the 1990 Human Fertilisation and Embryology Act (HFEA) and its section that allowed abortion up to birth in the case of disability, there has been a notable comment made on the matter. The Disability Rights Commission, now the Human Rights Commission, made it clear that the section: "reinforces negative stereotypes of disability and ... is incompatible with valuing disability and non- disability equally." In 2017, the UN Committee on the Rights of Persons with Disabilities inquiry concerning the UK of Great Britain and Northern Ireland recommended that abortion law be amended to stop the legalisation of: "selective abortion on the ground of fetal deficiency." The Disability Rights UK charity also commented on the section. Its CEO said: "fundamentally it is about equality. Wherever Parliament sets the number of weeks after which abortion is not permitted, it should be exactly the same whether the pregnancy is likely to result in a disabled or a non-disabled child. All lives are equal." We fully support Paul Givan's Severe Fetal Impairment Abortion (Amendment) Bill. This is a time in the UK where, as a society, we have come to understand that a life with a disability is a good and fulfilling life. This belief is reflected by the UK's commitment to equality for everyone. All our laws should reflect that. Abortion law is no different in that respect. We believe that, as laid down, regulation 2 7 of the Abortion (Northern Ireland) (No. 2) Regulations 2020, "Severe fetal impairment or fatal fetal abnormality", will perpetuate disability stereotypes. Our opinion has been drawn from the promoted standards around equality, together with our experience of over 30 years as a charity in this field. We are concerned that there was no meaningful consultation with disability groups before regulation 7 was laid down, wherein it may have been made clear that the exclusion of a disability clause from the regulations would not be in conflict with women's rights. As new laws are laid down, there is an obligation to wrestle with equality issues and, in the case of maternity issues, to ensure that we can support women who find themselves pregnant with a baby affected by Down's syndrome without coercing them towards abortion, subtly or otherwise. In Great Britain, the latter often takes place, as around 85% of women terminate following a positive screening result. Research shows us that women and their families are happy with their lives. We know that, with the right focus, we can further improve the health outcomes for this group. As we do for other social groups, our charity strives to achieve that aim. Whilst we understand that there are many, many people of goodwill in the health services in the UK, the presence of a disability section in our abortion law has become problematic, and led to the promotion of abortion for disability, the perpetuation of disability stereotypes and health inequalities for this group of people. In a country that chooses to hold equality so dear, we should definitely address that. Thank you, Chair. The Chairperson (Mr Gildernew): Thank you, Dr Corcoran. Lynn, would you like to make some opening remarks, please? Ms Murray: Sure. Thank you, Mr Chairman, for allowing me to speak to you again today representing the Don't Screen Us Out campaign. I reiterate that our campaign represents people from a broad section of society from individuals who give birth to babies as teenagers to those who give birth well into their 40s. Consequently, our supporters hold a broad range of views on lots of issues, including abortion. However, many of us are united on the matter of disability discrimination. The United Nations Convention on the Rights of Persons with Disabilities has previously directed the UK to ensure that abortion law does not discriminate against disability, nor should abortion law perpetuate stereotypes. That is why we support Paul Givan's Severe Fetal Impairment (Amendment) Bill's amending of the Abortion Regulations (Northern Ireland) 2020 to remove severe fetal impairment as grounds for an abortion. Women who are struggling with the idea of a future with a child with a condition such as Down's syndrome deserve emotional support. What they tend to be faced with is the offer of an abortion, which sends out the wrong signals about their future and their life with disability.
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